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Old 24-02-2009, 06:18   #1
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Cruising with Special Needs Kids

My wife and I have a 15 year old son with Down Syndrome. He is currently enrolled in an excellent school for kids with special needs. He has made tremendous progress in the time he's been there. The facility is new (opened in August 2008). The faculty and staff are amazing. He has made so much progress in the last two years after being transferred in from another school.

Now, we're closing in on our departure date. We're months away. Finding a way to home school him is our last big problem to solve. There is a lot of guilt involved in knowing that we're going to be taking him out of a terrific school and trying to do it all ourselves in order to go cruising. I've been searching for a home school program and/or information on where to start, but have come up empty. Everything seems to talk about the need to create an IEP, but not much about how to do it. Then, once you have the IEP, how to follow it.

Does anyone have any knowledge or insight into homeschooling special needs kids or can point me in the a direction to look?

Thanks,
Kevin
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Old 24-02-2009, 06:32   #2
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My 15yo son is autistic, I completely understand your concern.

I would spend as much time at his school working with his teacher as you can. You can only learn this stuff by doing it.

Most of the special needs programs are very understanding and will work with you in the child's best interest. If they ever give you any problems just mention the "Americans with Disabilities" act and they will bend over backwards to help.
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Old 24-02-2009, 07:42   #3
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I have a son with autism and severe ADHD, and that is the reason we are not cruising right now. As you can imagine, we have thought long and hard about this, so I'll share some of that thinking.

While my wife and I are both college educated and fully capable of homeschooling our kids (we'd actually prefer it) -- we have realized that 24/7 with our son would be too much of a burden on us and our neuro-typical daughter. It's more a matter of temperment than ability to teach. His behavioral problems would simply be too much to handle. If your child has a behavioral component to his disability, you may want to think about this. If your child's behavior is not any more stressful than a neuro-typical child's, I don't see any reason why you could not provide him with the same educational services he now gets at his school.

One other reason we decided cruising was not an option was safety. My son has very little self-awareness of safety issues (combined with the impulsivity of his ADHD, it's like having a toddler in the house all the time). The supervision that would be required to make sure he was safe on a sailing boat full time would be almost impossible to guarantee and the consequences of failure too high. This is something you will have to access with your child.

Since every child is different, another thing only you can answer is what affect taking your child out of a land-based community will have on his future independence. If his outlook is good for vocational training leading to independent living, then you might decide to postpone your cruising for another five or six years, so he can get the training he needs to function on his own. If his outlook is such that you will be caring for him for the rest of your life, with arrangements made for a supervised lifestyle after you pass away, then where he spends the next five or six years may make no difference at all on his eventual outcome.

The IEP could be mute point, depending on what services it outlines for your child. The IEP is valuable as a way to make the school system define the services they are obligated to provide your child -- and to make sure they actually provide them. If you are going to home school , YOU will be in charge of those services. You don't need a document to make you do that. The only area I can see where this might affect you is any special materials that are provided to your child that are outlined on the IEP (computers, physical therapy tools, etc). Taking your child out of school and moving him to another district (or constantly changing districts -- or out of the country for long periods, etc) may change the way the IEP laws are interpreted (the school may no longer be obligated to service a child who does not reside in their district). This is something on which you really need to seek qualified, legal council (unless you are prepared to personally provide any materials he needs). If your current district IS legally required to maintain the services, you may have to arrange your cruising plans so that you can continue an IEP program with your son's school. I see no reason why you couldn't attend IEP meetings by conference call.

I have always found that involved parents are orders of magnitude more valuable to a child with special needs than any Special Ed teacher. There is nothing particulalry difficult about the strategies and practices of teaching a child with special needs. If you and your spouse are of average intelligence, I'm sure you can handle it. The books are available, and you always have the staff at your child's school to ask questions.

You should be prepared to be more involved than you might otherwise be with a neuro-typical high-schooler. Most formal home-school curriculum at that level is self-directed by the student and supplemented by the parent.

If you are concerned with keeping up academicly, go and spend some time at your son's school (if you haven't already). Several, random days spent observing the day-to-day routine will show you how little time is actually spent on academic teaching/learning. A child being home schooled-- on a boat or not -- getting the personal attention of one or both parents -- will be able to accomplish far more in three or four hours each day than they would in six or seven hours in a formal school. Without the constant interuptions and non-academic distractions (lining up and changing between classes, "morning meetings," recess, assemblies, "special events" like movies, holiday parties), not to mention the time spent on stuff that has no relevence to your specific child, if your child is available to learn, he will most likely do much better under your tutelage than he would at any school.

I hope someone who is actually cruising with a child with special needs finds this thread and contributes. It would be nice to hear from someone with real world experience.

Good luck!

DavidGC
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Old 24-02-2009, 15:24   #4
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Another post that turned into a bit (??!!) of a ramble I am afraid

Quote:
Originally Posted by kevingy View Post
The faculty and staff are amazing. He has made so much progress in the last two years after being transferred in from another school.
I can't help with your specific query (I had to Google IEP )....and of course no 2 circumstances are exactly (or even anywhere near!) the same, but on the basis that folk with special needs on boats is perhaps not so common I thought I would chip in.......

My (late) elder Brother (Dennis. AKA "Gunga Din" ) also had "special needs". Not Downs, in this part of the world the term Mentally Handicapped covered the stuff with no specific names covering a wide range of abilities and which evolved into "Learning Difficulties", via a few other phrases. Could read (slowly) and write (badly) and catch a bus on his own, but although he loved plane spotting he would never be flying a Jumbo Jet - unless he had joined Al-Qaeda

I have been chatting to my father a lot more in recent times about Gunga Din and times passed, especially the decisions he had to make over the years and how although he was always trying to do the best for my brother it didn't make them easy. The Schooling was one of those where my Father still second guesses himself even though he believes he did the right thing for the right reasons and even now cannot think of better choices........

......but whatever, both my Brother and me grew up messing around with boats. In later years I had to go to work But my Father and my Brother continued with the messing around with boats stuff Moving from a classic 1950's sportsboat in the late 1960's to a motorsailer and then onto a Motorboat proper from the mid 1990's. No world cruising for them but used to spend extended holidays aboard in nearby France (both the coast and the inland waterways - including up to Paris ) for periods from a few days (it's only 15 miles away from here ) to many months. and in their circuit they were well known. and well liked. Gunga Din got a good turnout for his Funeral.......

Although my experiance of folk with Downs is not extensive, my limited experiance leads me to beleive that my Brother may have shared some important things - an absence of guile. and a genuine like of people. especially those who took the time to be interested in him or better still simply treat him as Dennis. Indeed I think many people were puzzled at their reaction to Dennis and why he made them feel good - a lack of Guile and a like of people will do that (me? I don't have that problem ).

Apart from Gunga Din being useful crew and not just a passenger (a matter of matching tasks to talents - and IMO important in life for everyone to feel valued and that they are contributing) he was much of the reason for my Father making so many voyages. Never a burden, simply a part of the Family - easy for me to say of course. But not always so (especially in the early years in the early 1960's) for my Father nor for you in more recent times I suspect.

Of course in recent years they did a lot more by Motorhome accross Europe - but still kept the boat going

What my Brother got out of the Boat was both adding more purpose to life, an interest in the boat itself, new adventures, sights and people. and seeing the same people again on "his" circuit But more importantly it provided him with a sense of security from being a full member of the family doing everything that the family did, including contributing to the pot. The sense of security was important to Dennis as he was aware that he had learning difficulties, and from other people in the same boat (to varying degrees) he was well aware that some folk in his position were simply walked away from. He was Mentally Handicapped / had Learning Difficulties not an idiot on stuff like that

Every story needs a bit of irony - a couple of months before Gunga Din died my father bought him a cottage in a sheltered housing complex for both of them to share with a view to my Brother living alone (with appropriate proffessional support - whether live in or not) after Father popped his clogs. They never moved in - but Gunga Din was very happy that his future was sorted........Now for a funny Father (aged 75) thought he would try living in the Cottage. Now moving out as:- "The place is full of old people and they keep f#ckin' dying"
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Old 24-02-2009, 15:40   #5
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Thanks for that, David...
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Old 24-02-2009, 16:50   #6
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Well written David.

My Thomas is the second of six kids and he is probably the one I most enjoy being around. Like you said, likeing people and not being judgemental attracts alot of people to him.

The day may come for him to travel with us and that will be okay. I just need to get the five other monsters out of the house first
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Old 24-02-2009, 17:09   #7
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David

That is one of the nicest pieces I have ever read.

Thanks.

Michael
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Old 24-02-2009, 23:59   #8
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Old 25-02-2009, 00:43   #9
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Kevingy,
If your son is attending a school, he should already have an Individual Education Plan in place. I would suggest a meeting with the team, get a copy of the IEP, obtain reports from all the clinicians and teachers, and observe what theyre doing. Then try to replicate what the school is doing at home. However, in my experience, the child usually benefits from the structure and social interaction of school.
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Old 25-02-2009, 02:53   #10
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Great photos David

Thanks for sharing the story.


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Old 25-02-2009, 08:09   #11
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Hmmm...... I cannot load the pictures. Did you take them down already David? Usually at work here I can load pictures in a thread.

Michael
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Old 25-02-2009, 08:24   #12
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I am going to make a suggestion and I hope to God I am not viewed as the evil man I am for making this suggestion.... but here goes....

Have you considered leaving him behind and cruising a route in such a way that you can fly back at regular intervals to visit and spend some time with him? Schools provide much more than academics and teaching set skills. I am sure you can do the homeschooling on the boat -- and you will likely cover the material more quickly and efficiently.

However, you may not be able to provide the depth of social interaction and activities over an extended period of time as his school can. With special needs kids, it is (at times) more about the learning that comes from multiple, ongoing social interactions with different providers than it is about learning skills and demonstrating profiency in academics.

The heart of my suggestion is this: He might be happier, do better, and have his needs better met remaining in his familar environment. Please note that I am **not** addressing your needs with my suggestion; what I am saying might sound icky and reprehensible.

And while I have limited experience with children with developmental disabilities, I wanted to toss this suggestion into the mix.

Michael
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Old 25-02-2009, 11:03   #13
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I dont know if this will help or not but I will throw it out there. A lot of states have online schools, now I would take bets that you could use them or the curriculum from one of them, given you have an internet connection and the states/schools willingness to adapt the curriculum to meet his needs.

My son just did a semester of independant study using the curriculum from the online school here in NC, there as a lot of planning that went into it on the part of the school and myself and my son but it worked.
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Old 25-02-2009, 14:29   #14
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In another thread, I posted the information that a 16-year-old girl had died of massive head trauma after she was struck in the head when a highly-tensioned hawser securing a mega-yacht snapped. She was a special needs child, I've read.

A poster on another forum, who reportedly knew the family, stated that the girl had a "bright, happy disposition," but that an impairment of some nature resulted in her acting younger than her actual age. He further stated that she was intelligent, not intellectually handicapped, but her child-like personality and stunning visage led to her parents decision to cruise around the world so that she could gain wider experience while still comfortably accompanied by her parents. The concern was that such a beautiful, though naive, young girl might be taken advantage of.

What a tragedy that the parents' selfless wish to help their child would end in such a heartbreaking way.

Here's a link to the other thread:

http://www.cruisersforum.com/forums/...ent-23990.html

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Old 25-02-2009, 16:47   #15
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Given what a bunch of cranky so and so's we can be on this forum, I am always amazed by the genuine concern and loving soul that is often expressed here. Thank you for your story, David Old Jersey. You have hit upon what I want for my special needs son, who is now nineteen, to live a full life and do the best and most he can. I suspect that is the same desire that Kevin has as well. Social interaction is important, especially for Down's kids so you will need to work that in. IEP is just individual education plan, get the info and techniques from teachers and therapists, but you know more about your child and how he learns than anyone and you will know more soon. Home schooling and all of its resources can be great. Be realistic, but know there are lots of possibilities.
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